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Impact of caring for children with medical complexity and high resource use on family quality of life.

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  • معلومة اضافية
    • المصدر:
      Publisher: IOS Press Country of Publication: Netherlands NLM ID: 101490944 Publication Model: Print Cited Medium: Internet ISSN: 1875-8894 (Electronic) Linking ISSN: 18745393 NLM ISO Abbreviation: J Pediatr Rehabil Med Subsets: MEDLINE
    • بيانات النشر:
      Original Publication: Amsterdam : IOS Press
    • الموضوع:
      Quality of Life*/psychology; Caregivers/*psychology ; Chronic Disease/*rehabilitation ; Disabled Children/*rehabilitation ; Patient Satisfaction/*statistics & numerical data ; Tertiary Care Centers/*statistics & numerical data; Ambulatory Care/economics ; Ambulatory Care/statistics & numerical data ; Child ; Child, Preschool ; Chronic Disease/economics ; Female ; Hospitalization/economics ; Hospitalization/statistics & numerical data ; Humans ; Longitudinal Studies ; Male ; Single-Blind Method ; Tertiary Care Centers/economics ; Wisconsin
    • نبذة مختصرة :
      Purpose: This study examined the impact of caring for children with medical complexity (CMC) and high resource use on family quality of life (QoL).
      Methods: Families of CMC enrolled in a complex care program completed the PedsQL Family Impact module (PedsQL FIM) and Healthcare Satisfaction module (PedsQL HCS) at enrollment then 1 and 2 years after enrollment. Tertiary center resource utilization and staff care coordination time were collected for the two years.
      Results: PedsQL FIM scores were low at enrollment and did not improve over time. Social Functioning, Worry, and Daily Activities were the lowest domains. PedsQL HCS scores were higher at enrollment, but also failed to improve over the two years. Changes in resource use were not associated with changes in PedsQL FIM or HCS scores. Staff care coordination time was highest for patients with ≥ 10 hospital days per year.
      Conclusion: CMC families' low QoL did not appear to be related to healthcare satisfaction or a shift from inpatient to outpatient resource use. Less staff support for families of CMC who spent more time at home may have contributed to their continued low QoL. Further study is required to identify causes of and strategies for improving the low QoL of families of CMC.
    • Grant Information:
      R40 MC 08960 United States PHS HHS
    • Contributed Indexing:
      Keywords: Children with medical complexity; complex care; family impact; quality of life
    • الموضوع:
      Date Created: 20150928 Date Completed: 20160706 Latest Revision: 20181202
    • الموضوع:
      20240628
    • الرقم المعرف:
      10.3233/PRM-150321
    • الرقم المعرف:
      26409861